Patient Voice

Working with those affected by prostate cancer

Scientists and Patients Working Together

We are committed to ensuring our work and research is informed by the people it matters most to – people affected by prostate cancer.

In particular, it is crucial that we involve and work with patients at every stage of the research process. There are many ways for you to get involved, from helping us decide what research we fund, to reviewing our communications, to sharing your story. Find out more about all all of our Patient Voice opportunities below!

No specialist knowledge, medical or otherwise, is required to take part in any of our Patient Voice activities. This is an opportunity for those affected by prostate cancer to use their own experiences to help us help other people and families who will be affected by the disease.

If you are interested in any of our Patient Voice activities, please fill in the form below and we will be in touch.

Our Patient Panel

In September, our Patient Panel helped us to review applications to our recent grant call.

We had planned to set up Patient Panel groups in five locations across the UK – London, Manchester, Cardiff, Newcastle and Aberdeen – to come together in September and help us select projects as part of our new grant call. Meetings still took place but in order to ensure the safety of our panel members during the coronavirus pandemic, they were conducted virtually.

Patient representatives were asked to read and discuss everyday language descriptions of research proposals. Example lay descriptions can be seen here. These discussions will be instrumental in helping us to decide which projects should be funded and enabling us to fund the best research.

We spoke to some of our funded scientists to find out why it is so important to involve those affected by prostate cancer in research.

Patient Spotlight

Meet Robin

I have been living with Prostate Cancer for the last five years and have been a PCR supporter for the last few years. I feel that it is vitally important to play a role in helping the charity in any way I can, and to be part of the ‘patients’ voice’. I was asked to participate in the Patient Panel for research grant applications and the Versiti Online Project.

The Patient Panel review process involved discussing and ranking eleven proposals against whether they were well explained in everyday language and their relevance to people with prostate cancer. Taking part in this process enabled me to have the opportunity to look at the proposals from a patient perspective and use my lived experience of prostate cancer to provide feedback.

The Versiti Online project looked at my experiences and views about prostate cancer. It involved me responding to a series of online questions about my own ‘journey’ in terms of my experiences of living with prostate cancer, support, and treatment over the course of 14 days. I found doing this very cathartic as it helped me to understand my prostate cancer better.

Being involved in the panel process of review of proposals and taking part in a research study ensures that the essential patients’ voice, is an integral part of studies into advancing care and treatment in prostate cancer research.

It provided me with an opportunity to shape and influence future developments, and reassurance that the patients’ voice is centre stage in the research work that is being done.

Meet Geoffrey

Geoffrey is one of PCR’s patient representatives. He was a member of our first ever Patient Panel in 2019 and helped to review applicants and select which research projects to fund from our 2019 grant call. His interest in cancer research stems not only from his own brachytherapy treatment, but also from losing a brother to advanced prostate cancer and a daughter (herself a young mother) to a brain tumour. Here, he talks about his experiences of getting involved right at the beginning of the research process.

As a supporter of PCRC for some years, I accepted an invitation to participate in the Patient Panel, reviewing proposals from researchers applying for funding of advanced prostate cancer research. This seemed to be an ideal way of helping PCRC, while also acquiring a better understanding of their research objectives and funding activities.

The panel members were asked to review 21 project descriptions written in everyday language that had been included in the funding proposals, and to rank them according to certain criteria – for example, was the idea well explained, was it relevant to people with prostate cancer, and was it interesting? We then met as a group, and, with the support of PCRC staff, discussed all the proposals and decided which should have high priority. Afterwards PCRC sent the feedback from the meeting to the applicants, so that they could comment on their proposals before further scientific review.

I believe it’s important to involve patients in the review of research proposals, in view of their own treatment experiences and their perspective on survival and quality of life. I congratulate PCRC on establishing the panel, and I would hope that the current work of PCRC in expanding their research funding and in coordinating research into advanced prostate cancer with other organisations will result in better treatments for future generations, and will also encourage others to support the charity.

Your stories

Another key part of our Patient Voice work is sharing the stories of those affected by prostate cancer. Stories can be shared via our newsletter, which is released twice a year, or via our website, or even both. Sharing your story could help others who are going through a similar experience to you and can also help to shape our research and work as a charity.

Clem’s Story

Alex’s Story

Neal’s Story

Treating prostate cancer information booklet

We produce an A5 information booklet ‘Treating Prostate Cancer, Questions and Answers’. We wanted to ensure that the booklet is as useful as possible to the people it was designed to help. The booklet was distributed to PCR patient representatives who agreed to review the booklet and provide feedback on how we could improve it. We produced a report based on the reviews and we will be implementing the feedback during the next print run of the booklet.

There will be further opportunities to review our communications in the future.

FAQs

I have never studied science, so I’m worried I won’t be able to understand the research.

You don’t need any special knowledge to take part in any of our patient voice activities. Everything will be explained in straightforward, everyday language, and if something is still unclear, it is our job to make it understandable. Our Research and Communications team will be present at all meeting to answer any questions you have on the day. You’ll also be sent project summaries in advance along with the contact details of PCRC staff who will be more than happy to answer any questions ahead of time.

I don’t feel qualified to make decisions about what research the charity should fund.

There are a number of things we consider when we are selecting what we fund next, including the scientific quality, how relevant the research is to patients, and how important and innovative the research question is. Our patient panels are invaluable in helping us to assess how relevant a research proposal is to people affected by prostate cancer. We have a rigorous process in place to evaluate the quality of the science. Our Scientific Advisory Committee and Board of Trustees consider both when they make their final decision.

Will it cost me anything to attend?

No. There is no charge to attend any of our patient voice events and you will not be asked to make a donation in order to do so, or at the event. We want our meetings to be accessible to everybody, regardless of their background or situation, so we can reimburse travel expenses and catering will be provided.

I would like to take part, but am worried about travelling, or I can’t travel very far. Is there a travel-free option?

We like to offer in-person meetings as we believe this offers a more positive experience and facilitates better discussion. We are planning to have more meetings around the country so that people can attend without having to travel all the way to London. However, we realise that some people may not be able to travel, so there will be the possibility to send notes in, which will be read and discussed on your behalf at the meeting, or to attend via a free videolink or phone call. During lockdown, we have had virtual live Q&A sessions between our supporters and our researchers, which worked extremely well, and we can use the same approach for these meetings.

Can I be anonymous?

Any feedback given to the scientists is anonymised, from both patient panellists and peer reviewers, and we will not share photographs or names of our patient panellists without their consent. Anything said within a patient panel meeting will be respected as confidential. If you would prefer to be completely anonymous, you can choose to review projects and send notes in in advance, which will be anonymised before they are read on your behalf at the meeting.

What about COVID-19?

We will never put you at risk. We cancelled some of our major events before lockdown was in place in the spring, as our first priority was and remains the safety of the general public. We know, also, that if prostate cancer has touched your life, you will be especially worried about COVID-19. We are monitoring COVID-19 on an ongoing basis and will hold entirely virtual rather than in-person meetings if it is unsafe to meet in person. During lockdown, we have had virtual live Q&A sessions between our supporters and our researchers, which worked extremely well, and we can use the same approach for these meetings.

I don’t have prostate cancer but my partner/parent does. Can I get involved?

Absolutely. We welcome the perspectives of both those who have been diagnosed with prostate cancer and those who are close to someone with prostate cancer.

I have been affected by prostate cancer and want to get involved with the charity, but I’m not sure that any of these options are for me.

We will continue to consider other ways that we can work with people affected by prostate cancer. If you would like to be kept up to date with future patient voice activities, or have any suggestions for us, please feel free to email [email protected].